Faces of CHD - Jase & Hudson

One thing that I believe most people affected by CHD's would like other people to know is that there is no cure for severe congenital heart defects.  The surgeries are not a fix and people born with a CHD will face a lifetime of cardiologist appointments, medications, heart caths, possibly additional surgeries/transplant, etc.  People with CHD's face increased risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.  The medical advancements in managing complex congenital heart defects are significantly better than they were just a few decades ago, and hopefully will continue to improve daily.  There is a long way to go, but I believe together we can one day find a cure for CHDs.

Heart Hero Jase 

Jase was born on August 22, 2013 with Hypoplastic Left Heart Syndrome.  Unlike many people that find out in weeks eighteen to twenty-two of pregnancy, we found out during discharge three days after Jase was born.  His oxygen levels dropped after circumcision and he never recovered.  The rush of becoming a parent and being on that high after his birth was met with something that no parent is prepared for, the reality of your three day old's mortality.  Fast forward through a Norwood with a late night six revisions, four days on ECMO, a week with an open sternum, two heart catheters, a Bi-Directional Glenn, and two and a half years later, Jase is doing great.

He loves anything to do with fish, cars, and Rocket from Little Einsteins.  He runs around (albeit he turns blue when he does causing everyone other than his parents to panic, but he doesn't seem to mind), swims, flies everything that might possibly be an airplane, and wrecks everything that might possibly be a car.

Looking back over the past two and a half years there are two things that stand out.  The first is that God will always give you the strength and comfort to face whatever comes.  That might be in the form of people who are going through the same things you are; doctors, nurses, or friends that you haven't seen in years.  The second is that when you see your child's heart beating through what seem like yellow Reynold's wrap, you don't take for granted how awesome getting up at 3:00 AM to watch the VeggieTales can be.

Heart Hero Hudson

At 20 weeks pregnant we heard the words no parent ever expects to hear.  There is something wrong with your child's heart.  It's hard to even explain how much my life changed that day.  After hearing numerous scary terms I had never heard before, it was finally determined that Hudson had Critical Aortic Stenosis that would ultimately progress into Hypoplastic Left Heart Syndrome as well as Pulmonary Artery Stenosis.  We were given four options:  a 3-stage palliative surgical repair, wait for a possible heart transplant at another cardiac center (our local children's hospital doesn't start off with transplant), comfort care after birth until Hudson passed away, or an abortion.  We definitely wanted to give Hudson the best chance at living a great life, and after talking with our cardiologist and learning about people in their 20's and even early 30's with HLHS, we decided to move forward with the 3-stage repair.  The Norwood surgery (the first surgery of the repair) was not invented until the early 1980's so there are no living survivors of HLHS older than early 30's.

Even though he was born full term, like many CHD babies Hudson was pretty small at birth.  Hudson had his first open-heart surgery, the Norwood, at just 2 days old.  It was very touch and go after that surgery and we almost lost Hudson several times.  Thankfully after a month in the hospital we were finally able to go home on oxygen.  At 3 months old Hudson had his second open-heart surgery, the Glenn.  It seemed to go well at first and we were discharged within a week.  However a few days later we were back due to a surgical complication called a chylothorax.  Hudson struggled with this complication, and we were in and out of the hospital for months.  Finally on Valentine's Day 2014 at our cardiologist appointment we got the great news that the chylothorax was completely resolved.

After that, we tried to transition into normal family life and focus on the future.  Hudson was growing and thriving.  We celebrated small victories like they were the biggest things in the world, because to us every victory felt like a miracle.  I remember for Hudson's 1st birthday I went crazy because I was just so thankful that he had made it to 1 year because there were times that we never thought we would see that day.  Hudson was an incredible little boy...smart,funny, loving, beautiful inside and out.  Looking into his eyes felt like you were looking into his soul.  He was our world and we loved him more than I thought was even capable.  On May 30, 2015 our lives were crushed when Hudson suddenly passed away from a cardiac arrhythmia.  The only thing that has gotten me through the days since his death is knowing that one day we will be together again in Heaven.  Hudson was much more than his congenital heart defect, but unfortunately that is what cut his life here on Earth short.  My husband and I are passionate about raising funding and awareness about CHDs so that hopefully one day no family will ever have to go through what we have.